Air travel

I use to travel, a lot. Multiple times a year, different countries, long trips and short trips, all of which I did with relative ease. I started traveling at a very young age, the simplicity and near-comfort that I felt with the entire airport routine (regardless of my location) has been a part of my identity for most of my life. From being the one who knew all the tips and tricks for getting through different airports quickly to feeling elation at landing in every new city, I reveled in the energy and unexpected adventures of frequent travel. 

With my broken body, traveling, especially airport traveling, has taken on a new light. It almost feels like a bad breakup. I keep getting hurt, staying away, and then going back for more. 

Recently, I took a short flight for a friend’s wedding. It was the first flight I’ve taken in a year and it was a quick two-hour jaunt between two major American cities. In the past, I would have simply booked the trip as an overnight. Fly in the morning of the event, fly out the morning after. That simplicity no longer works with my new normal. For what should have been an easy one-night excursion, I had to book a four day trip and allow for three additional hours on either end of my typical arrival and departure at the airport. Here’s how it boiled down.

Packing took place over the course of a week. Double-checking my prescriptions and supplemental medical stuffs to make sure I had enough for the entire trip, as well as a few extra days in case of emergencies. Choosing clothing that wouldn’t be too painful yet appropriate for the event and climate. Picking out shoes that I could wear for the entire commute and ones that I could suffer through during the wedding. Packing toiletries that didn’t aggravate my conditions. Choosing snacks that would help boost my blood pressure, not trigger vomiting, and were easy to digest. Figuring out how heavy was too heavy for my carry on luggage. Not a carry on. My carry on. The one that I would have to pick up multiple times, pull through the mile-long corridors, and place overhead on that tiny plane.  

Deciding how to get to the flight was the next obstacle. I currently reside about two hours from the airport. While there are multiple ways to get to the airport, only one of them would reduce my walking time. I took that path. After spending the night tossing and turning (who sleeps anyways), I loaded up my car and drove the two hours. Driving isn’t extraordinarily painful for me. It can definitely aggravate my pain and I need to readjust frequently but overall, my biggest issue with concentrating on the road is the possibility of a migraine flare-up. I got lucky and this wasn’t one of those days. After the drive, transferring to an airport shuttle, and walking to the entrance, I began the hardest part of my trip, the airport and flight.

Utilizing my prior flying expertise, I paid for an “upgraded” seat. You know the fancy ones on the aisle with two(!) extra inches of leg room. I don’t fly enough to pay for the U.S. TSA precheck/clear line. The times I have, they ended up being just as busy as the regular lines. Really, first-class is the only designation that makes a difference with security and boarding times. But I didn’t feel like paying $600.00 one way for a quick flight. I hold this wacky belief that all airline passengers should be able to sit with reasonable comfort in any seat. As the seats, bathrooms, and knee space continues to shrink, I don’t think the airlines agree with my standards. But I digress, sorry. It was at that point of having my boarding pass, seeing the security line, and knowing where my gate was that I had to decide whether or not to get a wheelchair. 

While many people do not, I currently have the luxury of choice when it comes to being in a chair. My condition is worsening but I can usually bear 10 minutes on my feet at a time.  I have a large mental block when it comes to needing a wheelchair. Part of me feels that I don’t deserve to take up that space. Another part worries about what people will think and say seeing a “normal” looking person using a chair. A part is ego and worries about how people judge women in wheelchairs. The most ashamed part worries that I am not disabled enough to use an assistance device and that it is infringing on someone else’s needs. So, like usual, I decided to step forward into the security line and pretended that I was perfectly able-bodied. 

I was fortunate to have a relatively quick line. Taking off my shoes and coat were easy because of my planning. I was aware enough to know that I needed to sit down as I put my bag and clothing back together. I had given myself an ample amount of time to get to my gate without rushing. There were a few tough moments as I stood on the train, stood in various lines, and walked for ages to get to my flight, but I made it. 

Boarding a flight is a frustrating experience for even the most physically fit person. The slow shuffle down the long gangplank, dealing with rude passengers, lifting your bag above your head and shoving it into a tiny space as you hurry to stuff yourself into a miniscule seat. I happen to be tall. Once I’m seated, my knees almost always hit the seat in front of me. My arms don’t fit easily inside the boundary of the armrests. When I need to stretch my joints or relieve pressure on my skin, I try not to hit my head on the bins or trip over someone with my numb feet. If I’m super lucky, I will get an exit row seat. I am not sure if I can open the door during an emergency, but I would happily dislocate a few fingers if it means a bit of extra room on the flight.

Finally, we landed. It was a smooth flight and my nervous system only had to do its typical summersaults instead of trying to keep up with fluxes caused by turbulence. I asked a burly gentleman to grab my bag and he was kind to oblige without questions. That hurried pace getting off the plane kicked in and I moved/limped along with the wave of bodies rushing for everywhere. Three days later, rinse and repeat. 

The time I spent away came with challenges. Lots of resting, people not understanding my nonparticipation, wanting to do more than my body would allow, vanity issues resulting in emotional darkness, and so forth. But also, lots of fun. I picked where I stayed carefully. I’m getting much better with my hate for planning. My hotel was across the street from a market, coffee shop, and some restaurants. There were easy delivery options and my room was set up in a way that I found accessible. My friends were kind and understanding of my limitations. Overall, the journey was worth it.

It took me about six days to recover once I arrived home. There were tears and anger around how much of a toll the trip took. I think about answers to this problem a lot. What would make traveling an enjoyable experience for those of us with diverse bodies? How can useful mobility and accessibility devices be developed in a cost effect way? What can airports and travel centers do to help us reach our destinations safely? How can we fully engage in travel and the joys it brings? I’m not sure yet but I know there are always solutions to problems which affect millions. One of us is bound to figure it out. 

I look forward to my next trip. Wherever I can go, no matter the pain, it is a privilege.

Just a little movement

I didn’t realize that I was athletic until I got sick. Playing outside everyday and having sports integrated into my life was something I took for granted. I grew up in a rural place where there weren’t professional or academic sports teams. Everyone was just always outside doing activities. My dad grew up playing organized sports so our weekend, holiday, and after school activities always included tennis, volleyball, swimming, surfing, fishing, baseball, basketball, etc. As I grew older, my sports hobbies took a backseat to everything else. But, I could count on my athleticism to make me comfortable and useful in almost any active situation. I had a few joint dislocations over the years but everyone who played sports had injury stories. My only limits were self-imposed. I assumed that everyone else without a visible disability was the same way. I think that is the definition of inadvertent ableism.

Across the board, doctors suggest exercise as a treatment method. I agree that being active is very important to a person’s state of mind and overall health. Exercise releases endorphins and building muscle (not necessarily mass) is a great way to feel powerful in your body. Unfortunately, when doctors prescribe exercise for every person regardless of their ailment, patients are left feeling confused and judged for their inactivity.

Diseases such as EDS, POTS, and Chronic Migraines put the sufferers in exercise limbo. If we workout too hard we may faint or trigger a migraine. If we over stretch our joints or do certain movements, we can have tears, dislocations, and lasting injuries. Many chronic illnesses make physical activity extraordinarily painful and dangerous. From pressure hives to cardiovascular strain, symptoms aggravated by exercise can vary wildly. 

With all that in mind, finding the right type of exercise for each person and disease is incredibly difficult. Trying out different types of activities with professional supervisors is a luxury many people cannot afford. In American, medical insurance seldom covers physical therapy for chronic disease. In most countries, access to people who know about rare and complex physical conditions is impossible. For everyone, getting tailored athletic plans is expensive and time consuming.

There are sports leagues around the world dedicated to disabled athletes. However, those clubs aren’t usually inviting to invisible disease participants. There are few things that feel worse than walking into a room full of high-energy chair and artificial limb dependent athletes and trying to explain how you fit in. The same can be said for joining a “regular” team. Showing up and explaining your limitations and physical quirks usually results in blank stares and claims of inclusiveness as you read the tardiness and commitment standards that you know you can’t always meet. Of course, judgment and guilt follows as you think about not being broken enough or not being normal enough.

I’ve found that typical physical therapists and personal trainers, even with their impressive educations, aren’t familiar with treating nerve disorders or Ehlers-Danlos Syndrome. In general, athletes are taught to push through pain to achieve results. Trainers and physical therapists follow that approach, leaning on pricey recovery tools and techniques to heal their client’s aches. When a person who is already wrecked asks for an exercise plan, they don’t know how to approach a workout that has such strict boundaries. 

There are kinesiology professionals who understand how to make your body move more effectively, if you have the time and money to work with them. There are also some activities that can cradle the most bent amongst us. Swimming is a great way to take pressure off your joints and provides gentle resistance. Simply walking in the water or floating around encourages muscle activation without working up a sweat or heavy breathing. The main obstacle with swimming is accessibility. Finding a clean pool or a calm body of water can be difficult. Playing with animals and kids is another activity that can be within your limits but still engages muscles and encourages movement. Even rolling a ball back and forth while sitting on the ground activates your abdominal strength and helps with hand eye coordination. 

I am lucky that my body still has the muscle memory of being athletic. My most painful and difficult activities rely on my former strength. While I haven’t found an exercise group, sports team, or place that fits my physical limitations, I have found ways to keep myself from losing all of my athletic abilities. When I feel good enough to be moving, those small actions make me feel even better. Just like taking control of your own medical care is daunting but worthwhile, so to is finding your version of exercise. There may be a couple extra painful days and physical mistakes along the way. All that trying may take years and will take patience, but having any positive control over your body is a wonderful thing. 

Zebra looking for an umbrella

Having more than one disease complicates everything. Most of those diseases being rare and understudied turn those complications into catastrophes. Doctors don’t know what to do with you and they truly don’t care to try. When you are already suffering from a mystery, the last thing you want is for your doctor to quit helping. Sometimes that dismissal seals a sufferers decision to give up. It reinforces their anxieties and amplifies their pain. Along with hope, their motivation for life disappears. 

I asked for help everywhere. At first, I didn’t know what was happening to my body. My early symptoms were dismissed as typical illness and injury. I was told to wait. Wait for relief. Wait for testing. Wait for medication. Wait for it to go away on its own. Nearly 7 years later, I am only alive because I didn’t keep waiting. I pushed even when I didn’t have the strength.

My first hospital and doctor experiences were awful. There was no interest in my case. There were misdiagnoses and poor advice givers everywhere. It was incredibly difficult to find a primary doctor who would take me on as a patient. Eventually, I found a small town physician who was known for not giving up on patients. He was not a miracle worker, but he listened and actually looked into my weird symptoms. 

After some testing proved that my symptoms were not imaginary, we agreed to send my case to the major diagnostic hospitals in the country. They all denied my application. Places like Mayo Clinic, Johns Hopkins, and the National Institutes of Health wrote back with letters stating that they had nothing to offer and would not look into my illness. It was a pretty disappointing time since my doctor was unsure of how to help me and I was holding out hope for a diagnostician who could create an effective treatment plan.

Eventually, we cobbled together enough local specialists who were mildly interested in my condition. They were all at different locations and held a variety of theories about how to proceed. Then I was hospitalized, again. My heart kept trying to kill me. This time it was at a major regional teaching hospital. It was a minor relief to be treated under one roof. At least at the teaching hospital, students and researchers kept doctors more engaged and on the cutting edge of medicine. I was there for 14 days. Through that time I had many tests and ALL the blood work. The diagnosis came towards the end. I had Postural Orthostatic Tachycardia Syndrome and Ehlers-Danlos Syndrome. 

Relieved to have names to what I was experiencing but wreaked from being hospitalized for two weeks, I worked on treating the symptoms. I was experiencing relief but also disappointment that my body kept rebelling in different ways. I had massive migraines and nerve pain that were not related to my diagnosis. Why was I in so much pain?

 It had been years of almost answers and I just wanted to know what was wrong at the top. What was my umbrella condition? All these issues couldn’t possibly be showing up as stand alone diseases, right? More years, more tests later, I was diagnosed with Small Fiber Autonomic Neuropathy (I’ll go into that process another day) and Chronic Daily Migraines. Somehow, my list of conditions kept growing. Keeps growing.

I still have the same small town doctor who initially took me on. He has been instrumental in getting me in the door with specialist and encouraging diverse treatment options. Even with his help, I can’t get anyone to find my overarching condition. Surprisingly, doctors seem extremely resistant to the idea that a body’s diseases are interconnected. What seems so obvious to myself and people outside the medical field is pushed against and argued by the doctors. 

I stopped searching for a cure to my broken body a while ago. I still hold out hope for a miracle but now I am focused on finding useful treatments and learning the interconnectedness of multi-system diseases. 

On a personal rant, from a non-medically educated perspective, it appears as though POTS, EDS, and Gastroparesis cluster together. People with one of these conditions often experience symptoms of the others. Women are especially vulnerable and have a glaring overlaps of the three. Autonomic small fiber neuropathy is a full body disease and is not mentioned much in medical literature. I am still at a loss for its explanation but it is definitely a part of RLS and likely MCAS. Migraines are a terribly common condition. Although they are well studied, a cure and a cause both remain mysterious. But what do I know? I’m just going through it everyday. 

If anyone out there finds an umbrella, let me know.

A walk too far

I am currently staying in a place with good public transportation (by American standards). Not only are the metro stations abundant, the lines are also timely and run across the whole city. There is a stop half a block from my home that takes me to large grocery stores, banks, and other errand locations. Before planning my time here, I had to carefully analyze this urban layout. It had to meet my mobility requirements and provide enough amenities so that I could receive timely deliveries when I couldn’t leave the house. 

This overly planned style is not how I use to decide my moves and travel. For most of my adult life, I would go when and where the mood struck. A new job across the globe, a vacation to a rural beach town, and a weekend adventure in a busy city center were all a part of my vibrant life. In fact, I probably became a bit too comfortable being nomadic. Moving and changing were my default way of being. Of course, eventually that lifestyle no longer fit my body’s needs. 

While I still fight routine and monotony, I have grown an appreciation for “sameness”. Having unpredictable diseases means that following a routine and specific methods for daily tasks provides a light barrier for surprise flare-ups. It goes against my instinct and upbringing but having some control over the environmental triggers in my life help mitigate my more disabling symptoms. Unfortunately, I’ve always tended to attract Murphy’s Law and general craziness as I go about my life. I use to just roll with it but everything is different now. Sometimes it’s humorous. Other times it’s frustrating and painful. Yesterday was one of the painful days, really painful.  

I had stored up enough energy (and eaten through my refrigerator) to go grocery shopping. This was a go to the big store kind of shopping trip. I planned on one bag worth of stuff since I was taking public transport. Upon arriving at my bus stop I noticed it was closed. Not a huge deal since there was another stop just 2 short blocks away. Thankfully, there were seats on the bus so I rode the quick 10-minute trip in relative comfort. There were no problems getting off the bus, walking the half block to the store and getting a semi-heavy bag of groceries. Walking to the returning bus stop, I noticed it was temporarily closed. I took a deep breath and prepared to walk the 3 blocks up a slight incline to the next stop. That stop was closed as well. I put down my bag and took a look at the transit tracker to find out why the stops were closed and which alternate locations were listed. There was no information about the stops being closed but the temporary sign noted that the next stop was just 2 blocks away. I was uncomfortable but had already paid for a round-trip fare so I decided to walk those final two blocks. As I went along I kept switching my bag between hands. Occasionally I would also use both arms to hold it in front of me and give my hands a break. I got to the bus stop and, of course, it was closed. At this point, I wasn’t far enough from my home to justify calling a ride. I also, have a terrible habit of pushing myself past my breaking point if I can see the finish line. So I hoofed it. I put my hair up, head down (so I could see what I was stepping on as my feet went numb), and thought of a midway point where I could stop and get an iced drink to raise my blood pressure. I made it to a café, got my drink and kept moving. If I stopped for too long I knew I wouldn’t make it home. As I crossed my threshold, my arms were shaking and my feet were screaming. I threw my groceries in the fridge and lay down.

Now I know a 20 minute walk with a bag of groceries wouldn’t be a big deal to most people. It would not have been a big deal to me 7 years ago. Unfortunately, now I live with a busted body and this is what that little unexpected city hike did to me. That night, it set off a massive migraine and left my feet numb with stabbing pain shooting through my legs and hands. My face flushed for hours and pressure hives appeared on my hands followed by an uptick in my nightly hives. The next day, I had to crawl out of bed. I had to hoist myself onto the toilet and had to sit in the tub to take a shower. I couldn’t wash my hair, as my fingers were useless. I couldn’t stand to make food so I didn’t eat and spent nearly the entire day lying down. Every move was agony and straightening my arms or legs felt like trying to uncoil springs. My knee had hyperextended during the walk and toes were bruised. 

Have you ever worked out so hard that your legs were jelly and your abs ached when you laughed? I dream about that type of pain. That good muscle building burn and humor inducing leg wobble. If only my pain was the result of a strong body functioning. If only my symptoms were temporary and disappeared by living a healthy lifestyle. 

The reality of living with chronic disease is that some days are just really bad. They remind you that of what you can’t do and what you miss doing. Those days pull the breaks on your momentum and positivity. They drop a cloud over trying to embrace your new self. They define your relationship with life and take color out of your day. Those days try to break you. 

When they ask, “What’s wrong with you?”

My officially diagnosed conditions and their medical definitions are as follows:

 

Ehlers-Danlos Syndrome (EDS) – Hypermobility type: “A group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues. Defects in connective tissues cause the signs and symptoms of these conditions, which range from mildly loose joints to life-threatening complications”. National Institutes of Health

Postural Orthostatic Tachycardia Syndrome (POTS): “Postural orthostatic tachycardia syndrome is a condition that affects circulation. It involves the autonomic nervous system and sympathetic nervous system”. Cleveland Clinic

Gastroparesis: “A disorder that slows or stops the movement of food from your stomach to your small intestine, even though there is no blockage in the stomach or intestines”. National Institutes of Health

Chronic Daily Migraines: “A moderate or severe headache felt as a throbbing pain on one side of the head. Many people also have symptoms such as feeling sick, being sick and increased sensitivity to light or sound”. National Health Service

Mast Cell Activation Syndrome (MCAS): “A condition in which the patient experiences repeated episodes of the symptoms of anaphylaxis – allergic symptoms such as hives, swelling, low blood pressure, difficulty breathing and severe diarrhea”. American Academy of Allergy, Asthma, and Immunology

Small Fiber Autonomic Neuropathy: “Occurs when the nerves that control involuntary bodily functions are damaged. The nerve damage interferes with the messages sent between the brain and other organs and areas of the autonomic nervous system, such as the heart, blood vessels and sweat glands”. Mayo Clinic

Restless Leg Syndrome (RLS): “A neurologic and sleep related movement disorder characterized by an irresistible urge to move in the legs that typically occurs or worsens at rest. It is usually accompanied by abnormal, uncomfortable sensations, that are often likened to crawling, cramping, aching, burning, itching, or prickling deep within the affected areas”. National Organization for Rare Disorders

Trigeminal Neuralgia:“A disorder of a nerve at the side of the head, called the trigeminal nerve. This condition causes intense, stabbing or electric shock-like pain in the lips, eyes, nose, scalp, forehead and jaw. Although trigeminal neuralgia is not fatal, it is extremely painful”. Cedars-Sinai

 

Here is how I would define the conditions in my own words:

Ehlers-Danlos Syndrome (EDS) – Hypermobility type: Double jointed. Doing party tricks with my flexibility. Some dislocations. Frequent subluxations. Stretchy velvet-soft skin. Thought this was a normal body type for most of my life. Gets more pronounced with age. Affects POTS and Gastroparesis.

Postural Orthostatic Tachycardia Syndrome (POTS): Dizzy when I stand up for awhile. Sometimes I faint. Heart rate skyrockets with slight movement and blood pressure plummets. Living in a frequent state of flight or fight. Thought this was a normal feeling for most of my life. Affects Chronic Migraine.

Gastroparesis: Stomach is paralyzed. Frequent severe nausea, vomiting, pain, and constipation. Can’t digest fiber and fat. Sometimes I get bezoars (fiber hair balls in stomach). Hellish journey to diagnosis due to gender stereotypes.

Chronic Daily Migraines: Severe stabbing pain on one side of my head. Accompanied by nausea and vomiting. Pain so bad that I have smashed my head against a wall and contemplated using a hammer on my face in a desperate bid to find/stop the stabbing. Triggers are elusive and pain can either be sudden or building.

Mast Cell Activation Syndrome (MCAS): Hives and hyper-sensitive skin. Especially bad at night. Skin looks like I have laid down in a bed of mosquitos and poison ivy. Mix of hives looking like small bug bites, rash, and large spider bites. Facial flushing. Shortness of breath. Night fevers. Itching so bad that skin sometimes bleeds. Thought I was being attacked by bugs every night. Affects Gastroparesis.

Small Fiber Autonomic Neuropathy: Being skinned alive with a burning hot knife. Sudden stabbing pain throughout the body. Having hands, feet, and legs squeezed in a clamp, set on fire, and then released, repetitively. Numbness alongside constant pain resulting in a lack of mobility, energy, and strength. No control over body temperature.  Affects Chronic Migraines, Gastroparesis, RLS, Trigeminal Neuralgia, and full autonomic nervous system.

Restless Leg Syndrome (RLS): Crawling and an almost deep itch sensation in the muscles of the legs and abdomen that only happens at rest and/or at night. Absolutely maddening, confusing, and causes insomnia. Thought this was not a real condition.

Trigeminal Neuralgia: Sudden shooting pain in my eyes and nose. Makes my eyes water and nose bleed/run. Shock-like pain made worse by cold and pressure. A miniature version of migraine level pain in face for short periods of time. Affects Small Fiber Autonomic Neuropathy.